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In 2018, the arrest of the Golden State Killer made headlines around the world. He was identified using a controversial new technique called investigative genetic genealogy (IGG). This technique involves uploading crime scene DNA to genetic genealogy databases with the intention of identifying a criminal offender’s genetic relatives and, eventually, locating the offender in their family tree. Since 2018, according to one expert, IGG has helped to close over 1,000 criminal cases, primarily in the United States. However, the technique also has been challenged by those who argue it violates the privacy interests of database participants and their families. Understanding the complex trade-offs that the public makes when assessing the value and acceptability of law enforcement use of genetic data will be important in ensuring that IGG-relevant policies and practices strike a balance between safety and privacy that is acceptable to the public. This project involves the following primary studies: - Qualitative interviews with technical experts to characterize and forecast law enforcement participation in genetic genealogy databases; - Focus groups and a survey with the U.S. general population to understand public perspectives and preferences related to IGG; and - A modified policy Delphi with diverse stakeholders to prioritize issues related to IGG and to develop policy options to address them. This project includes researchers at the following institutions: - Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA. - Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH, USA. - Division of General Internal Medicine, Department of Internal Medicine, The Ohio State University College of Medicine, Columbus, OH, USA. - Department of Bioethics and Humanities, University of Washington School of Medicine, Seattle, WA, USA. - Mary Ann & J. Milburn Smith Child Health Outcomes, Research, and Evaluation Center, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA. - Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. - Institute for Advanced Analytics, Department of Computer Science, North Carolina State University, Raleigh, North Carolina, USA. - Parabon NanoLabs, Reston, VA, USA. Related to The ForenSeq Study, the researchers have published the following original research studies and commentaries: - Dahlquist, J, Robinson, JO, Daoud, A, Bash-Brooks, W, McGuire, AL, Guerrini, CJ, Fullerton, SM. Public perspectives on investigative genetic genealogy: Findings from a national focus group study. AJOB Empir Bioeth. 2024 1–11. https://doi.org/10.1080/23294515.2024.2336904 - Guerrini CJ, Bash Brooks W, Robinson JO, Fullerton SM, Zoorob E, McGuire AL. IGG in the trenches: results of an in-depth interview study on the practice, politics, and future of investigative genetic genealogy. Forensic Sci Int. 2024;356:111946. https://doi.org/10.1016/j.forsciint.2024.111946. - Campoamor NB, Guerrini, CJ, Bash Brooks W, Bridges JFP, Crossnohere NL. Prestesting discrete choice experiments: a guide for researchers. Patient. 2024;17:109-120. https://doi.org/10.1007/s40271-024-00672-z - McGuire AL, Wickenheiser R, Budowle B, Gurney D, Guerrini CJ. Solving crimes while protecting genetic privacy. Forensic Genom. 2023;3(4):109-111. https://doi.org/10.1089/forensic.2023.0015 - Guerrini CJ, Gurney D, Kramer S, Moore, C, Press M, McGuire AL. State genetic privacy statutes: good intentions, unintended consequences? Bill of Health. Aug. 10, 2023. Available at: https://blog.petrieflom.law.harvard.edu/2023/08/10/state-genetic-privacy-statutes-good-intentions-unintended-consequences/. - Guerrini CJ, McGuire, AL. Studying public preferences and policy options for investigative genetic genealogy. ISHI News. Nov. 9, 2021. Available at: https://www.ishinews.com/studying-public-preferences-and-policy-options-for-investigative-genetic-genealogy/?utm_source=rss&utm_medium=rss&utm_campaign=studying-public-preferences-and-policy-options-for-investigative-genetic-genealogy. - Guerrini CJ, Wickenheiser RA, Bettinger B, McGuire AL, Fullerton SM. Four misconceptions about investigative genetic genealogy. J Law Biosci. 2021;8(1). https://doi.org/10.1093/jlb/lsab001. Related publications by the research team include the following: - Guerrini CJ, Robinson JO, Petersen D, McGuire AL. Should police have access to genetic genealogy databases? capturing the Golden State Killer and other criminals using a controversial new forensic technique. PLoS Biol. 2018;16(10):e2006906. https://doi.org/10.1371/journal.pbio.2006906. - Ram N, Guerrini CJ, McGuire AL. Genealogy databases and the future of criminal investigation. Science. 2018;360(6393):1078-1079. https://doi.org/10.1126/science.aau1083. FORENSEQ is a trademark of Verogen, Inc. and Qiagen, N.V. The ForenSeq Study is not affiliated with the FORENSEQ mark.
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